“There are only four kinds of people in the world: those who have been caregivers; those who are currently caregivers; those who will be caregivers; those who will need caregivers.”
- Rosalynn Carter
We come to the work of caregiving without any training on how to be an advocate for our loved one OR how to care for ourselves while we do this. Since this is sacred work, it requires a connection to our self, our loved one, our families and friends, the healthcare community, our Higher Power and the universe. Many of us don’t understand this need or know how to expand our world in the midst of a medical crisis. Whether you are a seasoned or beginning caregiver, it is easy to set aside your own needs for another. No one wins when we do this.
Caregivers, by the very nature of their work, tend to be isolated and uncertain about whether they are “doing the right things” for their loved one. Additionally, while adults are provided many models about how “not to do” something, we receive little to no guidance about what “right” looks like!
While I was a successful advocate for my husband during his protracted illness and hospitalization, I was an unsuccessful caregiver. What do I mean? I didn’t pay attention to the first and last recommendations in my book, Take Care of Yourself. It was only after five years of solo caregiving that I took stock of my own health and discovered:
- 100 extra pounds on my body in all the wrong places;
- high blood pressure that was not being controlled by three medications;
- extremely high triglycerides; and
- metabolic syndrome, a precursor to diabetes.
In order to address these urgent health issues, I had to completely remove myself from any caregiving and focus solely on myself, the result of which was a divorce. While I am much healthier today, in retrospect, I know now that my failure to attend to my own issues is very common among caregivers.
Today, my now ex-husband l and I are renegotiating our relationship as we finally acknowledge that we are no longer the same two people that entered the hospital almost seven years ago. How were we different?
- Bill was physically debilitated and mentally impaired. He expected “full” recovery in spite of being told otherwise. I other words, “my husband survived, the man I married didn’t.”
- I had terrible PTSD, jumped at any and every sound and was so hypervigilent that there was no humor left in me. And, truth be told, I was now used to being totally in charge.
Bill’s illness created his differences. I created mine. How did we get here? While Bill was hospitalized, I had nursing help to care for him. He was monitored 24/7 and someone else cared for the house. Once I brought him home, there was no help and I asked for none. I thought I could do it all. No machines monitored him, I did. I heard him begin to seize from another part of the house when he fell off the bed. I knew he was running a fever again when I thought to check it.
I took care of house, pets, finances (including $1.75 million in medical expenses), scheduled and transported him to copious medical appointments, managed prodigious amounts of complex medications, modified the house to accommodate his disability, carried his wheelchair everywhere, pushed him up the steps, required him to accept accommodations (like a gate belt) that he philosophically didn’t believe he needed. His resistance to this accommodation resulted in Bill falling and breaking his feet 3 times.